PLATINUM2024

UNITED LEUKODYSTROPHY FOUNDATION, INC.

DeKalb, IL   |  www.ulf.org

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GuideStar Charity Check

UNITED LEUKODYSTROPHY FOUNDATION, INC.

EIN: 35-1557361


Mission

OUR MISSION is to provide support to the leukodystrophy community and enable platforms to accelerate improving patient quality of life and finding cures. OUR VISION is to meet the needs of patients and families, whether newly diagnosed or living with a leukodystrophy. Through unified collaboration with advocacy groups, medical and research professionals, and pharma/biotech companies, we provide support, networking, and education to help navigate the journey of the disease.

Ruling year info

1983

Board of Directors president

Ron Chapleau

Main address

224 N. Second Street Suite 2

DeKalb, IL 60115 USA

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EIN

35-1557361

Subject area info

Medical education

Medical support services

Support groups

Genetics

Neurology

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Population served info

Children and youth

Adults

Families

Parents

Non-adult children

Show more populations served

NTEE code info

Specifically Named Diseases (G80)

Alliance/Advocacy Organizations (F01)

Brain Disorders (H48)

What we aim to solve

SOURCE: Self-reported by organization

The 50+ leukodystrophies make up a group of rare genetic disorders that affect the central nervous system by disrupting the growth or maintenance of the myelin sheath, which insulates nerve cells. These disorders are progressive, meaning that they tend to worsen throughout the life of the patient. The medical field lacks knowledge and treatment options, and there is not a cure for this disease.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Medical Research

Medical research towards advancing treatments for leukodystrophies.

Population(s) Served
Researchers
Adults
Children and youth
People with diseases and illnesses

We assist families by providing medical professional recommendations and promoting disease education.

Population(s) Served
Families
Adults
Children and youth
Caregivers
Parents

The Scientific Symposium is a meeting for research, medical, and industry professionals. The one-day meeting takes place on the day before the Family Conference and allows physicians, researchers, and more to share projects, discuss ideas, and network in a professional setting.

Population(s) Served
Adults
Academics

The ULF Family Conference is an annual event where affected families can access the worlds top leukodystrophy physicians and researchers outside of the restrictions of insurance and the hospital setting. Held over two days, the Conference aims to provide the latest scientific information to keep families informed on advances in the field but also guide families on topics that will improve their overall quality of life while living with a leukodystrophy. The Conference is an invaluable experience geared toward the whole family: Affected individuals, parents and caregivers, spouses, siblings, extended family, friends, and anyone else in their support network.

Population(s) Served
Families
Caregivers
Children and youth
Adults
People with diseases and illnesses

The United Leukodystrophy Foundation hosts an annual conference to bring families together across all leukodystrophies. It is a great opportunity to learn from others, share your journey and experiences and connect with families and medical professionals who all live in the rare world of leukodystrophy.
We offer and host online Caregiver support groups that meet up monthly. Connect with other caregivers to share knowledge and experiences with each other.

Population(s) Served
Adults
People with diseases and illnesses
Adults
People with diseases and illnesses
Caregivers
Parents

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of conferences held

This metric is no longer tracked.
Totals By Year
Population(s) Served

Families, Researchers, Caregivers, People with diseases and illnesses, Students

Related Program

Annual Family Conference

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Annually, we host a combined family conference and scientific meetings. Anyone who is affected by leukodystrophy or has a medical professional interest in the field can attend these meetings.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

The Foundation aims to promote the exchange of information to spread disease awareness and to provide funding for researchers to advance medical treatments.

We provide grant funding for researchers annually, and we offer assistance to families who are looking for medical information referrals and support.

We also host an annual Scientific Symposium & Family Conference. The Scientific Symposium is a meeting for research, medical, and industry professionals. The one-day meeting takes place on the day before the Family Conference and allows physicians, researchers, and more to share projects, discuss ideas, and network in a professional setting. The ULF Family Conference is an annual event where affected families can access the worlds top leukodystrophy physicians and researchers outside of the restrictions of insurance and the hospital setting. Held over two days, the Conference aims to provide the latest scientific information to keep families informed on advances in the field but also guide families on topics that will improve their overall quality of life while living with a leukodystrophy. The Conference is an invaluable experience geared toward the whole family: Affected individuals, parents and caregivers, spouses, siblings, extended family, friends, and anyone else in their support network.

We fundraise to provide the grant funding and work closely with doctors in the medical field to provide relevant information to individuals and families seeking help.

We have successfully fulfilled our mission of awareness promotion for 41 years and will continue to do so for the next 41 years and beyond.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback

Financials

UNITED LEUKODYSTROPHY FOUNDATION, INC.
Fiscal year: Jan 01 - Dec 31

Revenue vs. expenses:  breakdown

SOURCE: IRS Form 990 info
NET GAIN/LOSS:    in 
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.

Liquidity in 2022 info

SOURCE: IRS Form 990

155.16

Average of 129.65 over 10 years

Months of cash in 2022 info

SOURCE: IRS Form 990

5.4

Average of 4.7 over 10 years

Fringe rate in 2022 info

SOURCE: IRS Form 990

10%

Average of 13% over 10 years

Funding sources info

Source: IRS Form 990

Assets & liabilities info

Source: IRS Form 990

Financial data

SOURCE: IRS Form 990

UNITED LEUKODYSTROPHY FOUNDATION, INC.

Revenue & expenses

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

Fiscal year ending: cloud_download Download Data

UNITED LEUKODYSTROPHY FOUNDATION, INC.

Balance sheet

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.

Fiscal year ending: cloud_download Download Data

UNITED LEUKODYSTROPHY FOUNDATION, INC.

Financial trends analysis Glossary & formula definitions

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

This snapshot of UNITED LEUKODYSTROPHY FOUNDATION, INC.’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.

Created in partnership with

Business model indicators

Profitability info 2018 2019 2020 2021 2022
Unrestricted surplus (deficit) before depreciation $59,333 -$133,373 $376,094 $136,597 -$70,219
As % of expenses 16.4% -30.8% 117.0% 31.3% -12.6%
Unrestricted surplus (deficit) after depreciation $56,949 -$135,049 $375,905 $136,467 -$70,219
As % of expenses 15.6% -31.1% 116.9% 31.2% -12.6%
Revenue composition info
Total revenue (unrestricted & restricted) $418,227 $434,192 $703,990 $662,662 $498,897
Total revenue, % change over prior year -14.6% 3.8% 62.1% -5.9% -24.7%
Program services revenue 0.0% 0.0% 0.0% 0.0% 0.0%
Membership dues 4.3% 4.6% 0.1% 0.5% 0.9%
Investment income 6.7% 5.1% 2.8% 6.5% 7.5%
Government grants 0.0% 0.0% 0.0% 0.0% 0.0%
All other grants and contributions 90.4% 88.2% 92.6% 85.6% 112.9%
Other revenue -1.4% 2.1% 4.5% 7.4% -21.3%
Expense composition info
Total expenses before depreciation $362,858 $432,637 $321,489 $437,060 $557,781
Total expenses, % change over prior year -21.8% 19.2% -25.7% 35.9% 27.6%
Personnel 23.3% 12.7% 27.4% 36.5% 33.8%
Professional fees 8.5% 12.5% 16.4% 9.8% 3.9%
Occupancy 9.9% 11.4% 4.4% 2.7% 2.4%
Interest 0.0% 0.0% 0.0% 0.0% 0.0%
Pass-through 18.2% 20.7% 20.5% 15.6% 15.2%
All other expenses 40.0% 42.7% 31.4% 35.4% 44.5%
Full cost components (estimated) info 2018 2019 2020 2021 2022
Total expenses (after depreciation) $365,242 $434,313 $321,678 $437,190 $557,781
One month of savings $30,238 $36,053 $26,791 $36,422 $46,482
Debt principal payment $1,820 $1,430 $0 $0 $0
Fixed asset additions $0 $0 $0 $0 $0
Total full costs (estimated) $397,300 $471,796 $348,469 $473,612 $604,263

Capital structure indicators

Liquidity info 2018 2019 2020 2021 2022
Months of cash 2.1 2.8 16.4 6.6 5.4
Months of cash and investments 27.6 26.0 51.2 44.9 31.2
Months of estimated liquid unrestricted net assets 4.2 5.7 21.8 19.8 14.0
Balance sheet composition info 2018 2019 2020 2021 2022
Cash $63,861 $102,499 $439,980 $241,727 $250,074
Investments $771,591 $833,526 $931,328 $1,392,526 $1,199,928
Receivables $2,111 $0 $750 $0 $0
Gross land, buildings, equipment (LBE) $21,003 $21,003 $21,003 $21,003 $21,003
Accumulated depreciation (as a % of LBE) 90.5% 98.5% 99.4% 100.0% 100.0%
Liabilities (as a % of assets) 0.4% 1.0% 0.3% 1.0% 0.6%
Unrestricted net assets $127,569 $207,165 $583,070 $719,537 $649,318
Temporarily restricted net assets $214,645 N/A N/A N/A N/A
Permanently restricted net assets $500,000 N/A N/A N/A N/A
Total restricted net assets $714,645 $722,998 $792,284 $905,185 $797,723
Total net assets $842,214 $930,163 $1,375,354 $1,624,722 $1,447,041

Key data checks

Key data checks info 2018 2019 2020 2021 2022
Material data errors No No No No No

Operations

The people, governance practices, and partners that make the organization tick.

Documents
Form 1023/1024 is not available for this organization

Board of Directors president

Ron Chapleau

Ron, a member of the ULF Board since 2007, currently serves as President. His wife, Marla, has been a past board member and together they have three children: Alexandra, Aidan and Liam. Aidan was diagnosed with megalencephalic leukoencephalopathy with subcortical cysts (MLC-1) at about the age of 2. Ron has been a pharmacist for 30 years. His first 8 years focused on delivering information and care to others. Facing his sons long and gut-wrenching diagnosis process, Ron learned a new awareness. He gained the understanding of how critical it is to have reliable information and how much easier it is to receive when its delivered in a compassionate manner. Ron is grateful to the ULF and its connections to medical professionals who have been there for his entire family. As they continue the challenging journey caring for his son, he hopes to do the same for others facing a similar journey.

Number of employees

Source: IRS Form 990

UNITED LEUKODYSTROPHY FOUNDATION, INC.

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

Compensation
Other
Related
Show data for fiscal year
Compensation data
Download up to 5 most recent years of officer and director compensation data for this organization

There are no highest paid employees recorded for this organization.

UNITED LEUKODYSTROPHY FOUNDATION, INC.

Board of directors
as of 02/01/2024
SOURCE: Self-reported by organization
Board of directors data
Download the most recent year of board of directors data for this organization
Board chair

Ron Chapleau

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes